What are the effects of Herceptin for HER2 positive? Not doing chemo

Posted by caredwards33 @caredwards33, Mar 1 7:52pm

I recently had a partial mastectomy for 2 invasive carcinomas, 1.5 cm and 1.4cm. I both are hormone positive, and one is HER2 positive. I am 80 years old, and have declined chemo, since Stage 1 and need quality of life to continue to work for financial reasons. I had been told I need radiation, which I was planning to do, but now told I need Herceptin treatments. I am concerned about affects to heart, and also being sick after the infusions. What kind of symptoms did you have?

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Profile picture for caredwards33 @caredwards33

I don't have an oncotype score. It is all so confusing. Thanks.

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@caredwards33 an oncotype score is one tool that is often used in determining whether or not chemo will be beneficial. But some doctors consider it unreliable. An oncotype test doesn't take into consideration the size of the tumor, for example. It only tests the genetic components. But it can add insight into what treatments will best help you. Ask your doctor if this test might be useful in your case.

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I was hormone positive and HER2 positive. with a 2cc tumor. At the time I was 79. Now I am 84. I had taxol and herceptin, plus chemo, radiation and a lumpectomy. I have no sign of cancer now according to my oncologist when lookng at blood work. Herceptn has been a game changer making Her2+ survivable. It had no affect on my heart. In fact at my last check up my GP did an EEG and was astounded at the results. He came in to show me. I had no skipped beats at all.
I travel all over the countryby plane alone and live a wonderful lfe alone on 22 acres in CA. I did get neuropathy from the chemo and I can't drive. I decided not to bother with getting hand controls so I could go back to driving since I woud have to drive on a steep, windy road to leave my property.

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Profile picture for angele2times @angele2times

I haven't started infusions for herceptin. The biggest side effect is your heart muscle are they suggesting an echo before you start?? My doctor is, you should request them because of your age and financial concerns. The echo is easy, to have but you should be having them every three months and get your base line from first one. They will watch you closely if your heart seems to weaken during the first to third, they will stop the herceptin! Infusion about 30 minutes. Maybe a little longer. Good luck!!

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@angele2times
Thank you. Because of my age, and already having some heart issues, I am concerned about taking Herceptin. Also, it looks like it makes you nauseous?

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Profile picture for raebaby @raebaby

I was hormone positive and HER2 positive. with a 2cc tumor. At the time I was 79. Now I am 84. I had taxol and herceptin, plus chemo, radiation and a lumpectomy. I have no sign of cancer now according to my oncologist when lookng at blood work. Herceptn has been a game changer making Her2+ survivable. It had no affect on my heart. In fact at my last check up my GP did an EEG and was astounded at the results. He came in to show me. I had no skipped beats at all.
I travel all over the countryby plane alone and live a wonderful lfe alone on 22 acres in CA. I did get neuropathy from the chemo and I can't drive. I decided not to bother with getting hand controls so I could go back to driving since I woud have to drive on a steep, windy road to leave my property.

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@raebaby
So glad you are doing well! And glad to hear herceptin didn't affect your heart! Thanks

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Profile picture for angele2times @angele2times

@caredwards33
Herceptin does attack muscles and since your heart is a muscle that pumps that blood and you depend on this heart to pump blood, it's essential that you have ECHO cardio exams to get a base line and every 3 months. Do your own research, that's a must. When you have a starting point for your heart then they can tell if you are getting into trouble and stop or change medicine.
You are in charge here. So get the ECHO's, medicare pays for them. If not on medicare,check before you start. I have been told they are very expensive!! Find out what medicine they will pay for ?? This is life saving medicine that you need. Does this medicine address wht you have and what affects does it have on your body? As everyone is so different.

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@angele2times
Thank goodness I am on Medicare, and hopefully an echo cardiogram will alert if it is a problem since I already have heart issues. Thank you!

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herceptin and ECHO every 3 months! YOU GO GIRL!

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I did her herceptin for one year. The side affects are not bad considering chemo was horrible. You may be tired but that’s about it. I think herceptin saved my life besides my Lord and savior Jesus! I would try it and see how you do. Best of luck.

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Profile picture for caredwards33 @caredwards33

I don't have an oncotype score. It is all so confusing. Thanks.

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@caredwards33
My understanding is that oncotype is only for early stage of breast cancer, ER+, HER2-
Your cancer is HER2+, so chemo is recommended. Have you decided on the treatments yet? Best wishes.

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Profile picture for myoga @myoga

@caredwards33
My understanding is that oncotype is only for early stage of breast cancer, ER+, HER2-
Your cancer is HER2+, so chemo is recommended. Have you decided on the treatments yet? Best wishes.

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@myoga
BTW, I found this article explaining oncotype testing. Hope it helps.
https://www.mskcc.org/cancer-care/patient-education/oncotype-dx

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Without herceptin, the chance of HER positive recurring is high, even a small tumor. If you want to decline chemo, I would still consider herceptin. I had it for one year with few side effects. It's the most effective breast cancer drug of the past 25 years.

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